Bone Mets Thread

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  • Elisimo
    Elisimo Member Posts: 1,601
    edited December 2012

    Where has this year gone?  I have been out of sorts for seems like most of the year.  Glad my DH makes me get out at least once in a while. I have a DEXA scan soon and have not had one of those in a couple of years.  I am wondering why my MO thinks this will tell him anything different than the Bone scan and the MRI have not shown.  He is a little concerned that I have shrunk about 4 inches in the last 3 years.  I have been on Aredia since Aug. 2010 so I don't know what else can be done.  I am looking forward to tomorrow since we will be flying to Oklahoma to see my DD#2 and her DH and 4 girls.  That is our Christmas present to each other this year.

    Hope everyone has a Merry Christmas and days filled with joy and blessings.  AJ

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  • LauraOntario
    LauraOntario Member Posts: 377
    edited December 2012

    Merry Christmas to all.  I will be thinking of you.

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  • swimmom3
    swimmom3 Member Posts: 67
    edited December 2012

    Merry Christmas to all.  Remembering to count my blessings this day.  Scan and echo tomorrow in preparation for starting treatment in January.  Not how I want to spend the day after Christmas, but it gets me one step closer to fighting back against this stage iv nonsense.  I hope you all get to spend this day surrounded by those you love.--Cathy

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  • macyhen111
    macyhen111 Member Posts: 754
    edited December 2012

    Merry Xmas everyone!! Enjoy your holiday with your loved ones.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2012

    I wish my onc would have set up an appt to give me the results of my MRI. Instead of just a phone call.



    How long does it take a fracture in somewhere around the L4 to heal? It might be on the L4 or not. This is driving me crazy.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2012

    Christy it can take months even years for a compression fracture of a vertibrae. I had a car accident many years ago and had crush fractures on three vertibrae and they took forever to heal although one still shows up on every xrays and scan.

    Love n hugs. Chrissy

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  • Scorchy
    Scorchy Member Posts: 240
    edited December 2012

    Ana,

    I'm sorry to hear about this compression fracture.  Forgive me if you've mentioned this before (these pain meds are making me forget everything), but are you having a lot of pain as a result? 

    Hope you all had a pleasant holiday.  Now we get to return presents and plan for the most boring "holiday" of the year: New Year's Day. 

    Scorchy

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2012

    Thanks for responding, ladies.



    Chrissy - Not what I want to hear. I want to get back out in my garden. I need it to get my spirits back up.



    Scorchy - I've been taking 20 mg of methadone twice a day. I've had a few days where I had to add a couple of Norcos. But today it was just the methadones. The worst part is the mornings -- I never know if I'm going to wake up because of the pain or if it will be OK and I'm not desperate to get down the methadone.



    Christmas was great with the kids and grandkids. It was the 3 year old's first experience with Santa and Santa brought him what he wanted. He's sold on the guy!

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2012

    Pain update. I slept in this morning so I'm an hour and a half past my med time. The pain makes me want to cry. I don't have anything short term. Everything takes about an hour to start working.

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  • LizLemon
    LizLemon Member Posts: 540
    edited December 2012

    Oh - Ana - I am so sorry. Back when I had bc the first time, my Nugpogen shots gave me such pain like I have never felt before or since. I remember that every second before the pain med kicked in was like an eternity. I know there's nothing I can say to make it better - but just know that I am thinking of you and hope that pain med kicks in and you get some relief soon.

    Gentle Hugs -

    LL

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  • Scorchy
    Scorchy Member Posts: 240
    edited December 2012

    Ana,

    My heart breaks for you.  There is nothing worse than constant and severe pain.  It quite literally drives you mad.

    Have you consulted with a pain management specialist?  I am taking medication that controls the neuropathy throughout the day, along with lidocaine patches that also help in this regard, and then I have meds for any breakthrough pain.  The breakthrough pain has decresed significantly since I've had meds that are constantly working.  And I may have a nerve block on Friday.

    Before I got relief, I called my doc and said that I needed a long term pain management strategy as opposed to on demand pain relief with narcotics alone.  Such specalists are usually found within the department of anesthesiology in the hospital. 

    It hasn't been perfect and there will be fine tuning involved, but it stopped what was for me the hopelessness that swelled up every single time my movement, sleep, or life was limited/impacted by the pain.

    Warm Hugs,
    Scorchy

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2012

    Well I decided that I wasn't going yo wait another 3 weeks to see my onc. So I made an appt for tomorrow afternoon. Didn't even want to wait till he got back from vacation in a week. I'll see the Nurse Practitioner.

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  • chatter99
    chatter99 Member Posts: 49
    edited December 2012

    Scorchy, what's a nerve block? What do you take for pain- both time release and breakthrough?

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  • Scorchy
    Scorchy Member Posts: 240
    edited December 2012

    Good for you, Ana!  Given 'em hell! 

    They work for us, not the other way around.  No one needs to live in pain like this.  It is truly hell.

    Chatter,

    I just got the nerve block today so I can report back!  I, apparently, have really bad arthritis in the facet joints of the spine.  With the lytic lesion in L4, that vetebra can't support the weight, so the body is distributing it to the joints not meant to carry the weight.  So it woke up the facet joints and all hell broke loose.  My doc addressed the nerves emerging on both the left and right side of the L4 and L5 vertebrae.

    It was an easy outpatient procedure that took--tops--ten minutes.  I laid on my stomach, the docs cleaned the area maintaing a sterile field.  The docs use flouroscopy to guide needles near (NOT in) a nerve along the spinal column (I had four sticks).  They numb the skin and muscle first--which is the worst part--then the needle is guided into place and the numbing medicine is injected around the nerve. The doc also injected a steroid as well. They clean off the area and put some band aids on the injection spots.

    I can tell you that when I was in the waiting room, I was hurting so much I just wanted to crawl into a ball.  After the procedure I was sitting in the chair waiting for the doc to check in on me and I was looking around in disbelief.  I felt . . . nothing!  No pain!  I was smiling my entire way home.  I could not believe it.

    He did warn me that every individual's response is different.  Some feel relief for an hour, others four days, still others four weeks.  And it's impossible to predict.  I will keep and eye on it and meet with him in two weeks to evaluate. 

    A few hours after I got home the site hurt like a mofo, but he warned me about that and I took an Oxycodone and I seem to be okay now.  I am to continue taking Lyrica (twice a day) and use the Lidocaine patches on my back (12 hours on/12 hours off).  And Oxycodone as needed.

    Pain management, man.  I didn't know about it until a friend of mine (a nurse) wrote to enlighten me.  I am a huge fan and I need to get out the word.  Too many of us don't know!

    Scorchy

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  • LauraOntario
    LauraOntario Member Posts: 377
    edited December 2012

    Hi there

    I saw my radiation oncologist yesterday about pain I'm feeling in my ribs and mostly in my left shoulder and arm.  I told her I was afraid the cancer was spreading to these areas.  She looked at my chart and told me that my bone scan from two years ago showed that it was already there.  My ribs, my femur, my humerus.  I thought it was just down my back.  What I am wondering is why am I starting to feel pain now?  She is going to schedule another bone scan to see if there is progression.  Also, when do I ask for pain killers?  Thanks for any advice.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2012

    Hi Laura if you are in pain you ask for pain meds........there is no need to be in pain. So sorry you are just finding out now that your mets have been wide spread for a while and as for not having any pain until now, well, that's just what happens sometimes not all bone mets hurt from the get go.



    Love n hugs. Chrissy

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  • Scorchy
    Scorchy Member Posts: 240
    edited December 2012

    LauraOntario, Chrissy is absolutely right.  Ask forpain meds. And if they don't help,tell your doctor that you wanta strategic approach to managing the pain and seek a referral to a pain management practice.  I am beginning to sound like a broken record in this regard, but seeking the help of a pain management specialist has been life changing for me.  Transformative.

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  • LauraOntario
    LauraOntario Member Posts: 377
    edited December 2012

    Thanks, Ladies

    They seem to want to treat the pain with radiation, but I would like something I can take when it flares up like last night.  I'm going to ask for a prescription.  Thanks again.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2012

    Laura, the rads will help a great deal but sometimes it takes a little while to kick in so you will definitely need some meds to get you through. I had rads to my arm but I still need meds.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2012

    Sorchy - you made me laugh with that "give 'em hell" response!



    In all fairness to my onc, I think the MRI results were much different than what he was expecting. That's why he thought he could just give them to me over the phone. The TMs have been going down so he wasn't expecting progression but that is what it appears to be.



    The NP and I went over the MRI report. I don't actually have a fracture. The radiologist described it as "at the posterosuperior aspect of the body of L5 on the left side are thought to be some loss of definition of cortex and possible break up into the epidural spaceof the tumor at this level". A hole in L5.



    Some other findings that might be new. I had a small pity party the other day and I think I'm ready to move on.



    This appears to be aggressive like it was for my sister. It seems I'd better get my rear in gear and not waste these days. Sitting around isn't going to make anything better or heal anything. I guess I'll do things and use my new liquid oxycodone when I aggravate the mets.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2012

    Geez - I forgot to use Scorchy's favorite term.



    I take "Rest of my Life", Alex. OOOhhh - Daily Double. Risk it all Alex. What is PAIN MANAGEMENT! I won!!!!



    Sorry, ladies. I may have had a pity party but my melt down hasn't finished yet.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2012

    Melt away and no need to apologize.

    Caryn

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  • macyhen111
    macyhen111 Member Posts: 754
    edited December 2012

    Yes melt away. I find the occasional melt down pity party much needed in this process I am going through. I just don't like when my family asks me " Whats Wrong " DUH ! I Love Them So!!!!

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  • macyhen111
    macyhen111 Member Posts: 754
    edited December 2012

    Can someone please tell me what the neulasta shots are for?

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2012

    Neulasta is a colony stimulation drug for the white blood cells. Neulasta is given once per chemo cycle. Neupogen is the same but can be taken many times during the cycle. When I was doing AC once a week I would get neupogen the other 6 days.



    Is the Taxol taking down your WBCs?

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  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited December 2012

    Neupogen increases your white blood cell count and causes every bone in your body to ache. It tells the bones to make the white cells faster.

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  • macyhen111
    macyhen111 Member Posts: 754
    edited December 2012

    So if I have bone mete its gonna make me hurt worse? I am takindlg taxol once a week for 12 weeks will I possibly be on it to. All this cancer stuff is so new and foreign to me. My onc I feel is the right Dr for me but she is very abrupt and acts like I should know all this stuff. My oldest dd is a rn and she can't ubferstand a lot of what she is saying. I get copies of all my test but don't know what I am reading.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2012

    Macy if you want to know what you are reading just post the report and perhaps we all can help you decipher it for you. I know all this cancer stuff is like learning a foreign language but honestly you will eventually learn what most of it means. By the way, you are allowed to tell your doc that she is speaking a foreign language and you want her to tell you in a language that you can understand ............ They sometimes forget that we are laymen and haven't been to med school.



    Bone mets can cause pain but at the moment you will be feeling the SE of the Taxol.



    Love n hugs. Chrissy

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  • macyhen111
    macyhen111 Member Posts: 754
    edited December 2012

    Thanks chrissy

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  • Scorchy
    Scorchy Member Posts: 240
    edited December 2012

    I hate this.  I hate that any of us have to be subjected to this shit.  I'm so fucking pissed.

    Dammit, Ana.  Just dammit.

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